Melbourne teen with 'stone man syndrome' is one in two million

It wasn’t until he had hip surgery at the age of six that Melbourne teenager Tyson Stanley found out he was one in two million.

In hospital to have a tumour removed, doctors delivered a devastating diagnosis to the young boy and his family – that he had “stone man syndrome”, an extremely rare disorder which fuses muscles and joints into solid bone.

“When I was about four or five, mum and dad started noticing things, like I was limping,” the 14-year-old told 9NEWS.

There are only 800 known cases worldwide of fibrodysplasia ossificans progressiva (FOP), and only 13 in Australia.

Tyson’s parents said their son hoped to travel to the US eventually to meet others with the condition.

“Life expectancy is about 30, which is not something that we’ve discussed with Tyson,” his mother Talia Wilson told 9NEWS.

Tyson described the impact his condition sometimes had.

“Sometimes I just don’t really feel like I fit in because you know, every one of my friends doesn’t have anything physically wrong with them,” he said.

Hobbies like backyard cricket and everyday necessities, like moving around his family’s Somerville home, are becoming more difficult for Tyson.

He is no longer able to easily get in and out of the family car and the house is too small for his wheelchair.

But Tyson showed enthusiasm when it meant getting out of the house to watch his team - the Western Bulldogs - play.

“Tyson should be the head of the cheer squad, he’s that loud,” his dad Todd Stanley said.